Advice Please

[alteclancing]

A while ago I spoke to you all about by newly diagnosed KC and thank you for your help i've been wearing my glasses for about 22 mnths now and theres not much difference with or wothout them just causes a bit less strain on the eyes. I was always told about the gas permible lenses so today I went to visiuon express and got another check up they said my eyes were much worse measurments were Right eye cyl -3,50 axis 86 Left eye cyl -6.00 axis 110 but I was still able to reach the driving standered just about without lenses and not much better with. They said I would need to go to someone with gas permible lenses that could try them so I went to boots explained the situation ad they said they new what they was doing so they put my first Gas permible lens in my eye and then the specticles on top to see what prescription I would need but after about 1.5 hrs gave up they said it made very little improvment with or without the gp lenses and due to the fact they are very very uncomfortable you need to think carefully about your next option but did not really say what that should be as gp did not seem to work.

So I come to the pro's on this sight what would you advice ?. Is this common the gp making no difference ?

I could go to the doc who would pass me onto the specialises hospitals but i'm worried that due to me being borderline driving standereds and the boots guy saying the gp don't seem to be makeing a difference they might inform dvla.

What I don't get is that i've been keeping a rough eye on my vision using the downloadable eye chart and testing myself every couple of mnths and I can still see the driving standerd line aswell as I could see 2 years ago no less no more ?

[Lynn White]

Hmmm

It's very difficult for anyone to give you advice without seeing your eyes. One thing I would say though is that the chart on here is visible in optimum conditions and that the test you get in a high street practice is much more accurate re DVLA standards.

Which brings me onto the thorny question as to whether you seek advice or not based on your fear of being reported to DVLA. I totally understand your fears. However.. and you KNEW there was going to be an however! ... if you are borderline now you may at some point drop below the DVLA standard. If you are in any sort of accident (even if its not your fault) your vision may be tested by the police at the roadside and if you are below the standard, then you will be in trouble. Although you may not think so at the moment, it is really best to face these things head on. Yes, if you go and consult someone they may inform DVLA that you are not quite up to speed visionwise. On the other hand, they may solve your problems.

You may well need specialised fitting by someone who has more experience than the people you have seen so far. What you do need is a proper assessment by an ophthalmologist and for that you are best going through the GP and being referred to a hospital. They are going to be on your side and try and get you to see well enough to drive.

In this world, you are best facing what needs to be faced rather than trying to hide it under the carpet. Then at least you know where you are.

Please do pm me if you want to discuss your situation further.

Lynn

[alteclancing]

I've had a gander at professionals recommended on this sight and theres one based in Ilford Essex that is not to far from me. I do want to get somewhere with this so I'm happy to go there and take the advice. I suspect there is a few people around that are using private clinics rather than the hospital otherwise there would not be recommendations. What I was most concerned about as the borderline driving has been the case since I was 17 and I'm 32 now so it has not changed is that after trying the GP lenses and then doing the prescription on top like the man informed me in boots was exactly how it would be done in the hospital as he used to deal with KC patients in the hospital made very little improvement say I could just about read one more line on the snellen chart more clearly and I with some serious squinting could make that out just about anyway ?

Do the GP lenses not take affect immediately or something ?

He did say that in hospital they use something that finds out the thickness of the cornea and this is what they use to determine if it's getting so thin that it may erupt and therefor it needs an operation. However because my eyesight is such that it's not terrible than he would not think this was the case.

[Asif]

With your prescription stated in your first post, to me it seems your KC is not severe. RGPs do help most people and they should have helped you see more than one line better on the snellen chart. I dont think whoever fitted you with the rgps did not have a great deal of experience with keratoconics. One reason why you couldnt see a lot better was because the fit may have been wrong, which would have been difficult to assess with yellow fluoroscein dye if you were tearing a lot because of the initial comfort, which would also affect how well you were reading from the snellen chart. If that was the case he/she could have initially applied an anaesthetic eye drop which would help you tearing less so the assesment would be easier aswell as initial comfort. I remember when i was first fitted with rgps as a high street opticians I had a similar experience to yours. Rhps should make your vision better immediately and optimum vision is pbtained once the lens has settled about 30mins or so. I would recommend your gp to refer you to the hospital ophthalmologist who can refer you to a contact lens fitter with experience in fitting keratoconic patients

[alteclancing]

I'm assuming that your vision would only ever get back to what it was at before the KC which was never more than the driving limit. Which could explain why the gp's maid little difference if this is the case which is what I would expect as I can't see your eyes getting better than they was originally with the KC my eyesight on the snellen chart is only mildly worse and this may be why the gp's made only a slight difference ?. What in your opinion would be the deciding factor as the man who sore me yesterday when trying out my first gp's did say that they are very uncomfortable even though he did use some stuff to ease the comfort and that the very minute difference in sight might not be worthwhile he left that up to me to decide he quoted £100 each so £200 altogether and did say the hospital would be cheaper but for me that price did not seem to bad it was just if I'm going to get so little improvement is it worth it ?. I'm guessing that the people that it has helped allot are the people who had very good vision before the KC.

As stated I'm probably going to visit one of the opticians recommended likely Heather D Jameson from buckhurst hill or the man in Ilford as they seem to get good recommendation and where gp's are concerned should be right on the ball ?.

I totally agree that the hospital is the cheapest and best rough but it's whether if there going to do more less the same as the man has done or the recommended people on the forums would it be worth having there opinion first ?.

People on the forum that have been to the hospitals could they advice what happened with the DVLA did the hospital inform you that they had to advice the DVLA or was it left down to you. I would like to make it clear that at present and I am keeping an eye or 2 on the situation i am within the driving limits and sometimes a bit better.

[Matthew_]

My experience was that the Opthamologist advised me of my visual acuity relelative to the DVLA driving standards. In my case I was not safe to drive unless I wore contact lenses. He did not propose that he would contact the DVLA (I don't suppose they have time for that); but it was my repsonsibility to do so. I phoned the DVLA, who changed my record but told me they were happy for me to continue driving as long as I was properly corrected. It is my reponsibility to wear lenses when I am driving and always make sure that I do. As was said earlier, if I was in an accident and failed the vision test; I could end up with a very hefty bill and possibly criminal proceedings (quite rightly). It is far far better to keep the DVLA informed. I sometimes have to go for weeks being unable to drive and since my wife does not drive either this is very inconvenient; not as inconvenient as causing an accident through my own neglect.
It sounds like you need to be referred to an Eye Hospital. High street opticians rarely have KC experience and even if your KC is mild an KC experienced optometrist will probably get the best from your eyesight, which is always worthwhile. If you have specific treatments in mind, private treatment can help, if you can afford it but the treatment you get through the Hospital will normally meet your needs and at least give you the information you need to make an informed decision about the future.

[helen jones]

when I was fitted for gp lenses I was given a special gp for KC - a RoseK lens - I doubt if this was available at Boots - the guy I saw was not in your area but had been a contact lens specialist for years - it took a long time to fit the RoseK he had to keep adjusting the edge lift. No disrespect to the optoms who work in Boots but they probably didn't have the expertise of treating KC people. On the issue of DVLA - my mum works for an optometrist and she said they are only allowed to strongly advise the patient not to drive and are not allowed to pass on info to the DVLA directly.Might be different at the hospital. Other comments made about driving are true. A consultant I saw at the hospital mentioned various other options for contacts - it would be worth you going I think. Without my lenses I had 6/36 vision in my bad eye- with the lens I was back to 6/6